Blog Takeover: My Family Hosted a Legislative Home Visit ─ You Should Too.

My name is Lisa Letterman and my son John was in a severe car accident in 2020, which left him paralyzed from the neck down, unable to walk, talk, or breathe on his own. As he was preparing to be discharged from the hospital, I unfortunately was not aware of any other long-term care option other than a nursing facility, so I made the difficult decision to send him to a facility in Virginia. But after a short time, it was clear that John’s health and quality of life were deteriorating, so I started researching other care options until I found home care.

After a long and stressful separation, John was finally able to return home to receive in-home care under North Carolina’s Private Duty Nursing (PDN) services. Since returning home with one-on-one nursing care, his condition has improved immensely. He no longer requires a feeding tube, he is now able to talk on his own and is even slowly making progress in regaining movement. However, there is a new hurdle that we face: trying to find enough nursing coverage for John. There is a critical nursing shortage that leaves families like mine struggling to care for our loved ones on our own, putting us in a constant state of exhaustion and concern when we can’t get coverage. I knew that something must be done to fix this shortage, so I started to advocate.

Our experience with a legislative home visit:

Recently, John and I invited our North Carolina Representative, Dudley Greene into our home (virtually), to show the importance of in-home nursing services and to advocate for better access-to-care. At first, I wasn’t sure what to expect from the virtual visit, but I can tell you it was an incredible experience that I believe other home care families should consider when wanting to advocate and make a difference.

Before the visit, BAYADA client services manager, Rachel Miller, handled the logistics. Once we agreed to opening our home, she handled everything from scheduling, practicing our call, and keeping us updated. When the 30-minute meeting began, it was like Rep. Greene was sitting in our home having a conversation with us. He could see all of John’s machines, medical routine, and he listened to the challenges we face. It was clear by the look on Rep. Greene’s face that he was truly understanding our situation in a way that no letter, email, or phone call could describe. We had his undivided attention for 30 minutes and in that time, we showed him the power of home care. After the visit was over, both John and I were impressed with how easy and rewarding the process was.

Top Left to Right: BAYADA CSM, Rachel Miller; BAYADA Government Affairs Manager, Cai Yoke; BAYADA Director, Kristen Church
Bottom Left to Right: North Carolina State Rep. Dudley Greene, BAYADA client & NC resident, John Letterman during the virtual home visit.

Why I advocate:

I advocate for home care because I can’t image what it would feel like to go through what John, and others like him, have had to experience and not have anyone around to speak up on your behalf.  I have seen John in every stage of his recovery: in the hospital, nursing home and then at home. It is because of PDN that John is thriving and living the quality of life he deserves. I want other families to have access to this same high quality, in-home care, but without better state-funding, that won’t be possible.

John Letterman with BAYADA nurse.

Why YOU should participate in a home visit:

Legislators like Rep. Greene determine the budget and funding for these types of programs, so we must do our part to educate them as best we can. I believe that legislators want to make a difference in their communities and help their constituents, but most are not aware these issues even exist. The more that decision-makers understand of the benefits of in-home care, the more advocates we have supporting our cause. Whether it’s a virtual or in-person home visit, these types of interactions with legislators give them a glimpse inside our challenging environment and help them understand the importance of in-home care ─ something that an email, letter, or phone call could never convey.

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. At Hearts for Home Care, we help those that care about home care by enabling YOU to get involved at the capacity in which you’re able to do so.

Email us at advocacy@bayada.com or visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

Patient Recognition Week: Celebrating Patients Who Live Their Life to the Fullest Thanks to Home Care

For thousands of Americans across the country, home care allows them to be contributing members of society, giving them the freedom and independence to live life to the very fullest despite their diagnoses. During National Patient Recognition Week, Hearts for Home Care celebrates some of these unique and inspiring patients who are foraging their own path and letting nothing slow them down. These individuals are proof that quality, in-home care, can truly change someone’s life for the better.

La Mondre Torohn Pough

La Mondre Torohn Pough, South Carolina.

LaMondre Torohn Pough not only lives his life in his community, independently, but is also contributing member of society. Thanks to the support of home health aides who care for him and keep him safe at home, LaMondre has become a highly successful businessman, owning his own podcast, 5P with LaMondre, and company that focuses on inspirational speaking, entrepreneurship, and consulting. If it weren’t for his in-home caregivers, LaMondre would need to be cared for in a long-term care facility instead of thriving at home.

In return, LaMondre is a passionate advocate for the healthcare heroes who care for him along with other people with disabilities. He says: “Caregivers contribute so much to the community of people with disabilities and society as a whole. Effective advocacy is essential to ensure that we create an equitable and sustainable future. We are in this together.”

John Letterman

John Letterman with his home care nurse, North Carolina.

After a severe car accident in 2020, North Carolina resident, John Letterman was left paralyzed from the neck down, unable to walk, talk, or breathe on his own. Unfortunately, as he was preparing to be discharged from the hospital, John’s family were not told they had the option of bringing John home under Private Duty Nursing (PDN) care. Knowing no other option, they placed him in a nursing facility where his health deteriorated.

After a long and stressful separation from his family, John was finally able to return home to receive PDN services in his home. Since returning home with one-on-one nursing care, his condition has improved immensely, no longer requiring a feeding tube, able to talk on his own, and slowly making progress in regaining movement. Thanks to this quality, in-home care, John recently invited Representative Greene into his home (virtually), to show the importance of the care he receives and advocate for better access to care. John said that it’s important that decision-makers understand the impact of home care, espeically if they are the ones passing the budget and determining funding. “We need more people educated about home care so they can be advocates for us too,” he said.

Erin Hamby

Erin is 20 years old and relies on highly skilled nurses to care for her complex medical needs in the comfort of her home. If it weren’t for access to home care, Erin would unfortunately be in a skilled nursing facility, separated from her family and friends and without the personalized care she receives at home. However, thanks to in-home care, she has not let her diagnosis slow her down! With the support and care from her in-home nursing team, Erin has been attending college at Caldwell Early College and most recently, she was accepted at N.C. State, which she will be attending virtually in the fall!

Erin Hamby, North Carolina.

Erin’s father says that home nursing is crucial to Erin’s quality of life: “It allows her to be home and not in a facility. Her nurses have become her friends and they are invaluable to us as a family in managing her medical needs, equipment, and prescriptions. I don’t know how we would manage without these nurses, to be perfectly honest.”

Advocacy Matters!

Despite the fact that many people in government and regulatory positions agree that home health care is a cost-effective, patient-preferred solution, it continues to be prioritized below institutional care. Not investing in home care will decrease the supply of qualified workers, increase turnover, and compromise the quality of home care services. At Hearts for Home Care, we help those that care about home care by enabling YOU to get involved at the capacity in which you’re able to do so.

Email us at advocacy@bayada.com or visit our website  in order to learn more about the home care advocacy community and find opportunities to get involved.

New Year, New Home Care Wishes for 2022

2021 has been an incredible year for home care advocates, who continued to discover that meeting with legislators and sharing their personal home care stories did not have to occur in-person only. Embracing an increasingly digital world has been an advantage to many home care clients, caregivers, and families who are home-bound or have mobility issues—or are just plain too busy to be able to travel to and from legislative meetings.

Additionally, in the second year of COVID, many state and federal decision makers started to truly understand why home care makes sense: It keeps vulnerable individuals at home and out of potentially-infectious institutions, and it saves Medicaid programs money by doing so. 2021 was filled with many legislative accomplishments in which lawmakers opted to increase funding for home care programs in light of the ever-persistent challenges home care clients and families continue to face—primarily the difficulty in accessing home care when there is still—despite increasing funding—a workforce shortage.

In-home nurses, home health aides, and other caregivers are the backbone of the home health care industry. Home care would not be possible without these compassionate heroes that help families stay together. And while 2021 was filled with accomplishments, two advocates share their New Year’s hopes and show us why we all must recommit ourselves to home health care advocacy in 2022.

Below, see what home care client Ari A. of North Carolina, and home care mom Jill P. shared with us regarding the challenges they still face, and what they hope to see in the New Year.

Ari A. – Home care client in North Carolina

Ari with nurse Katrina Clagg, LPN.

I can’t tell you how much of a God-send it was to recently learn the fantastic news. NC Governor Cooper signed a budget that raised the Medicaid reimbursement for Private Duty Nursing (PDN) by 13.6%! I know so many people, including myself, who have been struggling to get their shifts covered because of low pay. These struggles go back several years, even before the pandemic. COVID -19 just made the staffing crisis in home care more visible to the public. I’m glad it did. It meant that the NC legislature could see more clearly the dire need, and they acted. Talk about seizing the moment! For this, the NC General Assembly will forever have my gratitude. 

Now that PDN can be more competitive with higher pay, hopefully nurses in other fields will see why we love home care. We love it because it is a protective shield that protects patients like me from the harm that can happen to us each and every day. Just last week my airway became totally blocked all of the sudden. Once again, one of my nurses saved my life. She acted professionally and calmly as she quickly fixed the problem. I wouldn’t have gotten such a fast response anywhere else other than one-on-one care at home. Without it, I certainly would have died. 

Home care to me also means love. I get to spend my life at home, sharing the love of my family, instead of being stuck in a medical facility, or not alive at all. It’s the best Christmas gift that keeps on giving all year round! 

So for all you working in the hospital or as a travel nurse, I have great hopes for 2022. Home care overall is fast becoming the new front line of medical care. More and more people that need complex care are coming home from the hospital and we need you! Simply put, taking care of people in their own home is the best way to advance your skills and help vital members of the community as well. Chronically ill patients like me are ready to welcome you into our homes with open arms. You will find that it is one of the greatest gifts you will receive! 

With Much Thankfulness, 

Aaron “Ari” Anderson 

Jill P. – Maryland mother of home care client Nadiya

Nadiya (front) is able to spend the holidays at home with mom Jill and her family

Nadiya shares a smile in her MD home.

Our 17 year old daughter Nadiya has life threatening seizures and multiple complex disabilities caused by a rare genic disease. She relies on night nursing to keep her safe. It is essential but for the last several weeks we have had only 2 of our 7 nights covered.

It is difficult to find capable, reliable nurses who have the skills to manage complex unpredictable seizures and assist with her activities of daily life. Because we live close to DC, many good nurses choose to work in DC where they can make more money through higher Medicaid reimbursement rates.

My child’s future health and safety as she transitions into adulthood, is reliant on home care. This is a great concern for our family. The pandemic has made this already complicated problem much worse. For 2022, I hope that more state and federal lawmakers continue to see how impactful home care is for families. I hope that more families become involved in advocacy and share their stories so that there is a groundswell for better wages and incentives for these frontline workers.

Home care nurses are an essential support that need to be valued and compensated competitively for their important work. Until that changes Nadiya’s future care is not secure. 

Jill Pelovitz

Parent, Caregiver, and Passionate Advocate

Pennsylvania Home Care Recipients Advocate for Better Access to Home Care

 Pennsylvania ranks seventh in the nation for the percent of its population that is 65 years of age or older1. As Baby Boomers continue to age and the population of older adults needing long-term care increases, the need for caregivers will continue to increase as well. Since COVID shined a light on major drawbacks of congregate living facilities like nursing homes and institutions, it is not just the elderly population that are choosing to be cared for at home. This is great news for the hundreds of thousands of individuals and families who prefer to age at home rather than in a facility. However, it also poses a major problem: there aren’t enough caregivers to take care of the current Pennsylvania population at home let alone the 29% growth that will occur by 2028, leaving a shortage of 73,000 home health aides2. This is due in large part to low state funding for Medicaid programs like Pennsylvania’s Personal Assistance Services (PAS) that cares for medically fragile individuals.

Stephen Hoppy from Luzerne County, PA with his home health aides

This is where our advocates come in. Home care recipients across the Commonwealth have banded together to help alleviate this growing caregiver shortage. Advocates like Stephen Hoppy from Luzerne County, PA are speaking out and helping raise awareness of the inadequate state funding. Stephen is approved for 20 hours per day of care from the PAS program, but since he cannot find enough caregivers to cover all those hours, he has been paying $500 per week out of his own pocket to help secure that coverage. Recently, Stephen was interviewed by FOX56 News about how the caregiver shortage has affected him.

“I am advocating because our healthcare system is compromised. There are plenty of people worse off than me that can’t get home care, which is unacceptable. These home health aides are medical professionals, and they need to be paid for their expertise and knowledge,” says Stephen.

COVID has only exacerbated this issue, with a mass exodus of health care workers no longer willing to risk their lives for a career that yields an average of only $12.40/hour. BAYADA Home Health Care has had to deny 40% of PAS cases in 2020 and 2021 because there were not enough caregivers to staff the cases. Teri Henning, the executive director of the Pennsylvania Homecare Association (PHA), says she’s hearing similar numbers from PAS providers across the board. “They simply cannot compete for the workforce,” she says. “Home health aides can earn more money doing similar work in other state home care programs, or in nursing homes, or even doing less physically- and emotionally-demanding work at Amazon, Target, or in fast food.”

“BAYADA Home Health Care has had to deny 40% of PAS cases in 2020 and 2021 because there were not enough caregivers to staff the cases.”

Pittsburgh resident, Maria Kolat with son Matthew

Home care advocate and mother, Maria, from Pittsburgh has also joined Hearts for Home Care’s advocacy efforts after experiencing these issues firsthand with her 22-year-old son, Matthew, who is developmentally disabled and requires non-stop supervision. Since COVID, their lives have dramatically changed—his schooling, his ability to receive psychological and medical care and—very significantly—his family’s ability to access the home health aide (HHA) care that Matthew needs and is qualified to receive. Maria and Matthew were featured on Pittsburgh’s local KDKA 2CBS station advocating on behalf of home health aides.

“Aides are leaving the caregiving field to work at big retail like Walmart and Amazon—or in fast food,” says Maria. “They can make $15 an hour or more there. When we see a revolving door of aides, Matthew can’t get the one-on-one care he needs, which puts him at risk.”

Home care advocates like Stephen and Maria give life to our advocacy efforts ─ their real-life experiences aren’t just numbers and statistics, but genuine struggles that thousands of Pennsylvanians endure every single day. They help tell the story so that legislators and influencers can fully grasp how their decisions are affecting their constituents and communities.

Home care advocates like Stephen and Maria give life to our advocacy efforts.

At the end of the day, when aides are not being drawn into working in home care, it’s Pennsylvania’s most vulnerable residents like Matthew and Stephen who suffer. PHA, home care providers, and advocates are asking the State to increase funding for the PAS program. Additional funding would put home care agencies in a better position to recruit and retain more HHAs, and thus ensure that PAS beneficiaries can continue to access the care they need to stay safe and healthy at home.

  1. https://www.leadingagepa.org/Portals/0/154869%20Long%20Term%20Care%20Statistics%20Book%20revised%20final.pdf page 14.
  2. https://mercer.healthcare-workforce.us/ +math

Advocacy Matters!

At Hearts for Home Care, we help those that care about home care by enabling you to get involved at the capacity in which you’re able to do so. Email us at advocacy@bayada.com or follow us on Facebook.com/Hearts4HomeCare in order to learn more about the home care advocacy community and find opportunities to get involved.

Home Care Has a Distinct Place in the Future of US Healthcare

States are beginning to make key changes to increase families’ access to home care

The COVID-19 pandemic has increased people’s awareness of the US healthcare system’s dependence on institutional care, and the potential dangers that come with a reliance on congregate healthcare settings. Nursing homes and hospital are a necessary part of the healthcare continuum, but COVID has undoubtedly increased the public’s appetite for—and governments’ understanding of—accessible home care.

90% of America’s seniors say that they prefer to age in place…

COVID may have a long-term effect on healthcare policy, as it has shifted the spotlight to the inherent benefits of home-based care. Home care is cost-effective: It costs governments, insurance companies, and individual families less to provide care in the home than in a hospital or facility. It’s also patient preferred: 90% of America’s seniors say that they prefer to age in place, and families with medically-fragile children and adults know their loved ones do better when they are in their own home environments.

In general, across the US, funding for home care programs continues to lag behind funding for services delivered in facilities like hospitals and nursing homes.

Home care advocates—state and national home care associations, providers, home care employees, and clients & families—have been advocating for better funding and better policies for home care for years with mixed success. In general, across the US, funding for home care programs continues to lag behind funding for services delivered in facilities like hospitals and nursing homes. But in this first post-COVID budget season, advocates have seen successes!

We’ve moved the needle: Several states increased their Medicaid funding for home care programs. The New Jersey legislature increased funding for home care by $2 more per hour, and for skilled nursing home care by $10 more per hour. Additionally, Delaware increased funding for skilled in-home nursing by 15%, and Georgia, Indiana, Missouri, and Pennsylvania have increased funding for private duty nursing by 10% or more. Thank you to these states for recognizing the importance of home care.  Increased funding will help thousands of children, seniors, and adults with disabilities and medical complexities access the home care they’ve been struggling to access due to caregiver shortages that have plagued the nation.

Other states have increased funding for home care at smaller increments, including Minnesota and Vermont. While any increase is appreciated, there is still work to do in these states and many others: Increasing funding, and reviewing it regularly, is essential in ensuring that caregivers’ wages can remain competitive as costs of living continue to rise year by year. If home care funding is raised now, but then ignored for years to come, then families that need home care will be back to the same situation they were in pre-pandemic: Struggling to find the care they need to stay safe and healthy at home.

On behalf of the home care community, thank you to the many legislators and decision-makers who have supported home care this year!

New York State Budget Finalized with $550 Million Increase Restored for Medicaid Funding

Earlier this year, New York Governor Andrew Cuomo announced his plan for the 2020 state budget, including a 3.6% planned budgeted increase to overall health care spending. When proposed tax revenue estimates came in much lower than anticipated, the administration decided to cut approximately $550 million of this increase. But after strong advocacy efforts from many health care groups across the state, the Governor and his administration changed their position, keeping the $550 million Medicaid increase in the budget.

BAYADA’s Government Affairs Office (GAO) participated in several conference calls with the New York State Home Care Association (HCA) to learn more about Medicaid spending, which accounts for 42% of the budget, and what we and our office staff, clients, and families can do to advocate for higher wages for home care nurses through increased reimbursement rates. 

Currently, New York’s Medicaid reimbursement rates are well-below surrounding states, so many caregivers are discouraged from entering—or staying in—the home care industry due to abysmal wages. It also impacts BAYADA because the rates are currently so low that we are currently not be able to provide sustainable Medicaid-based home care in the state and pay caregivers an appropriate wage.

As part of a larger national trend, New York did vote to increase the statewide minimum wage to $15 per hour incrementally through 2021. New York understands that home care providers that do provide Medicaid-based services would not be able to comply with this minimum wage mandate and stay sustainable under current rates. The final budget did include an additional $1.1 billion to support the cost of raising minimum wage for health care workers. BAYADA is currently advocating for similar increases in other GAO states that have increased the mandatory minimum wage, but have not increased reimbursement rates in tandem. Medicaid rates must keep pace with the rising cost of living and increased wage mandates to ensure that providers can stay in business, and to ensure that vulnerable New Yorkers can have access to quality home care.

Delaware Sets Grassroots Advocacy Records in 2019!

More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!

Delaware Ambassadors and employees have set participation records at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).

The first, the Delaware Association for Home and Community Care (DAHCC) Legislative Day on March 13, had a record attendance of more than 50 attendees! 41 registered for the event, which would have been a record itself, but the larger-than-expected turnout was an impressive surprise. Seven providers, including BAYADA, were represented, and the crowd included six families advocating for themselves and their nurses. Everyone wore their own company’s branded gear but united behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.

BAYADA employees made their voices heard in front of the DE Joint Finance Committee

In another first for Delaware, two legislators spoke in support of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House Majority Leader, Representative Valerie Longhurst. Both spoke passionately about the importance of home care in our communities and the need to increase reimbursement to ensure that this vital care is available to those who rely on it.  They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.

A week later, on March 20, Delaware advocates broke another record when 15 members of our community testified before the powerful Joint Finance Committee (JFC) in support of increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott, Danielle Myers, Shannon Gahs, Dave Totaroand representatives from Epic/Aveanna and Maxim/Aveanna.  Client Haley Shiber was unable to attend in person but sent a powerful testimony video to the JFC members before the hearing. The Joint Finance Committee hears budget requests from all state agencies and testimony from the public before making an annual budget recommendation to the full General Assembly. The General Assembly frequently follows the majority of those recommendations. Members of the committee told BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!

The industry-wide coalition led by BAYADA and DAHCC is pushing the Delaware legislature for a 21% increase in the Medicaid home care RN and LPN rates, which would impact our Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less than Medicaid fee-for-service, these new higher rates would have to be paid not only for “straight Medicaid” hours but also those funded by managed care in Delaware. These two rates currently remain at their 2006 levels, harming our ability to recruit and retain the highly-skilled RNs and LPNs that are so important to the lives and welfare of our clients.

Thank you to our advocates who turned out and made sure that Delaware’s decision makers know that we are here to advocate on behalf of our staff and clients, and that home care makes a difference in the lives of so many Delawareans!

Maryland Receives Major Medicaid Rate Increase- 30% Over the Next Six Years!

Great things happen when we advocate together! After years of advocacy from BAYADA, our partners, and many parents and home care employees, the Maryland General Assembly recently passed two pieces of legislation that collectively will increase all Medicaid home and community-based services reimbursement rates by more than 30% over the next six years. Though initially met with opposition from Governor Larry Hogan, the Maryland General Assembly heard our voices and overwhelmingly voted to override his veto of one of the bills.

The first bill, the state’s annual budget, provides a rate increase of 3% that will go into effect July 1, 2019. The second bill, also effective July 1, 2019, contains an amendment which will increase reimbursement rates by 4% each year between July 1, 2020 and July 1, 2025.

Currently, Marylanders who rely on in-home nursing care have only 83% of their authorized hours filled, meaning that families struggle to fill their medically complex loved ones’ skilled home nursing care nearly 20% of the time! We have found that Medicaid rates have stagnated below the cost of living and below wages seen in other settings—such as hospitals and facilities—and surrounding states—and that families were struggling to fill these hours. We are hopeful that these access-to-care issues will be alleviated as providers will be able to recruit and retain nurses within the home care industry, and that more of Maryland’s most medically complex will be able to stay safe where they want to be—in their own homes.

This was a true team effort led by BAYADA and the Maryland National-Capital Area Home Care Association (MNCHA) and including MNCHA member providers, several individual families, parent advocacy organizations and disease-specific advocacy organizations. Special thanks to JoAnn Saxby, Patrick O’Malley, Eddie Dyer, Patty Watson, and Susan Ingalls who all played important parts in making this happen and to BAYADA Delaware employees Mandy Brady, Kristyn Kelsch, and Taylor Kosinski who went above and beyond to advocate in their sister state. Mike Sokoloski, Tara Montague, and Nicole Onofrio were instrumental in supporting two Town Halls and Legislative Day, and Alisa Fox coordinated timely articles in The Baltimore Sun, The Washington Post, and on WDVM TV in Western Maryland. Maggie Tracy managed countless logistical hurdles and supported direct lobbying and grassroots efforts.

Thank you to everyone who played a role in this major achievement! Advocacy cannot succeed if only one voice is heard, and your advocacy has contributed to the well-being of so many Marylanders in need of home care.

For more information on this increase, or how you can get involved in advocacy in Maryland, please contact Shannon Gahs at sgahs@bayada.com.

Hearts for Home Care Kicks Off 2019 with Two Heartfelt Visits with New Jersey Clients

Last week, Hearts for Home Care members and BAYADA employees Dave Totaro, Tara Montague, and Alisa Fox traveled to northern New Jersey to meet two home care clients and their caregivers to learn more about how home care has impacted their lives and how they advocate on behalf of themselves and their loved ones.

Meeting Addy and Gloria


Photo: DOV client Addy R. and her HHA Gloria have an unbreakable bond

First, the team stopped by a BAYADA service office in Dover, NJ to meet the staff and learn about the struggles the office regularly faces in recruiting and retaining home health aides. Per staff member Helena Anton, challenges lie primarily within staunch competition in the area and finding the high-quality and compassionate caregivers that “you can tell are put on this earth to care for others,” as Helena puts it.

“Smaller home health care companies can usually pay the caregiver more in wages because we put that money into benefits, training, and supplies. But the real problem is that Medicaid reimbursement rates are so low that these caregivers—no matter what company they work for—aren’t making enough. That’s why we need to advocate to make sure the state sees how low wages are impacting so many New Jerseyans that are able to live and their communities and thrive with home care,” added Helena.

After the discussion, the Hearts for Home Care advocates met home care client Addy and her aide Gloria. The crowd was nearly brought to tears by Addy’s story regarding the challenges she has been able to overcome with her “teammate”—which is what she calls Gloria.

“I was extremely touched by Addy’s and Gloria’s relationship. Not only is it clear how much Gloria has impacted Addy’s daily life and her sense of self-worth, but the way that Gloria talks about Addy’s influence on her own life is incredible. You can tell that Gloria was truly put on this earth to be the nurturing, compassionate caregiver that she is,” said Tara Montague.

Recently, Addy and Gloria visited Senator Steve Oroho to share their story and to advocate for better state home care policies. “Helping people is important. And it’s important that those who help others get the help that they need too,” Addy told the group. Addy recommitted to continuing to advocate for herself and for others who are impacted by home health care. “I want to share my message with legislators. It’s my way of giving back,” she said.

Lili and Emma Welcome Advocacy into Their Home


Photo: Lili and her nurse Barbara share a high five

Next, Dave, Tara, and Alisa traveled to Morristown to visit home care client Liliana “Lili” and her mother Emma in their home. As a single mom, Emma relies on home nursing so that she can keep her full-time job and keep Lili at home. She told us that her service office team works hard to ensure that every one of Lili’s shifts are covered. She also shared about times when that coverage wasn’t so steady: “Our routine and our comfort level is only as good as today…When Lili’s main nurse Liz retired, we had a few months where we didn’t know what tomorrow would bring.”

Lili benefits from New Jersey’s private duty nursing (PDN) program, which allows for children and adults with skilled care needs to live at home. Without this program, it is unlikely that Lili would have been able to grow up with her mom and graduate from school as she did. The PDN program’s rates need to be raised in order to better attract more nurses to home care, as most can currently make a higher wage delivering skilled care in a hospital or nursing home. One of Hearts for Home Care’s major advocacy goals for 2019 is to educate legislators on the need for a rate increase and to secure one on behalf of all New Jersey home care clients, families, and nurses.

Like Addy, Emma is committed to ongoing advocacy to ensure that nurses see home care as an attractive employment option, so that other families can receive the home care that they need too. In recent years, Emma has hosted state elected officials in her home. “Seeing our daily routine and how important it is for Lili to have a nurse at home is the most impactful way for an assemblyman or senator to understand home care,” said Emma. “As a mother of someone who is able to stay home due to in-home nursing care, I see it as my duty to advocate…Not just for Lili, but for those in the state who are struggling to get the nursing they need.”

“It’s our clients’ and families’ voices that make the biggest impact on our state and federal elected officials’ decisions about home care. Because of advocates like Addy and Emma, legislators better understand the impact home care has on their communities,” said advocate Dave Totaro, who also serves as BAYADA’s chief government affairs officer.

There are plenty of ways to advocate, even from home! To find out ways that you can make an impact, contact us at advocacy@bayada.com. Together, we can share our voices to make 2019 the best year for home care yet.

Across the Country, Parents and Home Care Supporters Advocate for Better Wages for Caregivers

We know the struggles families can face with home care: The call-outs and missed shifts, the lack of sleep, the caregivers who are like family but can’t afford to make their own ends meet, and the frustration that comes when you or your loved one can’t access the care that is deemed medically necessary. We also know the value and impact that sharing our voices has.

Recently, home care advocates have made the news for their efforts across the country. Specifically, on December 28, the Washington Post covered the impact that providers and parents are having in driving public awareness of the struggles that Marylanders and Virginians are having in accessing the skilled nursing home care their families need.

Washington Post reporter Tara Bahrampour points to low reimbursement rates in both states as the major issue contributing to families’ struggles—

“The reason lies in a stark state-by-state discrepancy in the pay in-home nurses receive through Medicaid. Maryland and Virginia have set reimbursement rates significantly lower than surrounding jurisdictions…As a result, licensed practical nurses [LPNs] are finding more lucrative positions out of state or at hospitals or other care institutions that pay more, leaving many homebound Medicaid patients without services.”

Hearts for Home Care has been leading the charge in Maryland, where a coalition of home care clients, parents, providers, and other advocates are pushing for a 25 percent increase for skilled home nursing services. Advocates say that this increase—half of which would have to come from state coffers—would serve to alleviate families’ inability to access care an average of 17 percent of the time, as reported by the state’s Department of Health. Hearts for Home Care advocate and BAYADA Home Health Care director Shannon Gahs says:

“Maryland is failing its citizens who have significant medical disabilities. Failing to provide care 17 percent of the time not only creates a dangerous situation for the person who relies on that care—it harms his or her family. Parents are calling out of work and losing the sleep they need to stay healthy to support their family. They’re doing everything they can to keep their family members safe, but this is not how it is supposed to be. We have to do better.”

In comparison, neighboring Delaware found that shifts are missed 7 percent of the time. There, the state reimburses providers at a rate approximately 30 percent higher for LPN home care services.

In California, Governor Jerry Brown recently proposed a whopping 50 percent wage increase for home care nurses—a move that advocates have pushed for over the past several years. As with families across the country, Californians who require skilled nursing home care have been struggling to get nursing care for their loved ones. Advocates report that under Medi-Cal—the state’s health care system for low income and disabled Californians—rates have not been addressed in 18 years.

While both the Maryland and California proposals are still pending, home care advocates have been successful in driving public and legislative awareness of low reimbursement rates and the impact on families’ access across the country in recent years. Most recently, the home care industry has seen reimbursement rate increases in Rhode Island, Massachusetts, South Carolina, and New Jersey among other states. It starts with educating legislators through advocacy via any number of channels: Traditional and social media, letters, phone calls, meetings, and more.

While advocacy can seem like an intimidating activity to many who do not yet engage in it, it’s important that we share our advocacy wins with the home care and health care community at-large. As illustrated in recent news, when we band together to leverage our voices in unison, big changes can happen. It’s important to take that first step and make your message heard on behalf of the millions of Americans that rely on home care.

To learn more about how you can engage in home care advocacy, visit www.heartsforhomecare.com or email advocacy@bayada.com today.